February 07, 2016

Let's talk about urination, shall we?

I thought it was about time I provided an update about Alex and his poor stinkin’ bladder. Many people have asked recently how the little guy is doing and I was beginning to feel like a broken record (for those who even know what a record is). No change. Every day rocking back and forth saying, “ow, ow, it hurts” and every night waking up multiple times basically saying the same thing. The bladder numbing meds they gave us at the ER were completely ineffective. A few days later the pediatrician prescribed Ditropan, a medication used for bladder spasms and no improvement from that either. I mentioned in my last post that he did seem to get some relief from extra hydration, but even that seemed like it wasn’t helping all the time. We finally got in to Urology on January 11th! First, I have to say I love the Nurse Practitioner in Peds Urology. She is fantastic. She said the two reasons kids have issues like Alex was having were constipation and dehydration, alleviating those takes care of 90% of painful urination cases. She took him off the Ditropan, as it can make constipation and bladder retention worse. She wanted him to have a “video urodynamic study” to check all of his areas. She noticed in our scans from the ER that he had irregular bladder edges and was holding A LOT of urine (funny, at the ER they told me everything looked totally normal – this is the difference in seeing a specialist). Unfortunately, the time table for getting an appointment, as it is a procedure with sedation (thank goodness, because not all facilities do it with sedation) was going to be about 6-8 weeks. Seriously, 6-8 weeks with the all night crying and random painful screaming all day!?! It seemed so unfair that this little guy would not receive relief anytime soon. She told me to increase his fluids even more and call her or email her with any changes or concerns. For some reason, perhaps a bit of trust and faith. I was not disheartened. I really felt, knew, that it wouldn’t take that long to get seen. Sure enough, a few hours later I got a call from scheduling and thanks to Tricare returning the authorization very quickly they were able to schedule Alex for the following Tuesday due to a cancellation. Praise God! Aaron and I took him the following week. As luck would have it the PICU team monitors the sedation for the procedures and Dr. Cochran was rounding. We love Dr. Cochran. He was there with us on some very tough days with Max in the PICU and I will never forget him crying in Max’s room following a failed extubation. So in a way, I feel kind of silly, as the nurse is giving us a rundown on Dr. Cochran and how much we will like him, how good he is, trying to alleviate our fears, I mean she has no idea what we have seen in a hospital and I wasn’t going to get into it and explain this was really no big deal to us. Then the doctor comes in saying, “The Highs, my heroes!” The nurse was like, “oh, I see you already know each other…” It was good catching up. Thankfully, we have been here almost two years and had ZERO PICU stays, pretty much a record for this house. Okay, back to Alex…they did the study which basically consisted of putting a catheter in, draining his bladder (incidentally he had 200ml, almost a cup of urine, in his bladder and had been NPO even fluids for over 2 hours, yikes), then placing another catheter, filling and then emptying the bladder all while watching on x-ray and with leads. The basic gist at the end of the test was overactive bladder with retention. He was indeed having pretty intense spasms and was holding his urine. We met with the urologist afterwards and she placed him on an increased dose of Ditropan and scheduled him for an MRI to see if we could find the cause of the spasms (some have no cause, but she wants to rule out everything). We are still waiting for the MRI, that will be on Feb. 18th. This will see if there are possibly any growths at the bottom of the spine causing issues for the bladder. In the meantime, there have been a couple of breakthroughs and a bit of a bumpy road. They told us that with the bladder retention it would probably be difficult, if not impossible to potty train. Well, just over a week following the urodynamic study, after a particularly awful night, Alex was literally up all night screaming and would not urinate I typed a long email to the NP at urology basically saying something has to give. We, he cannot live like this. Please try to get our MRI moved up. When Alex woke up I told him he could not get out of his bed until he peed. He refused. Out of utter desperation (never underestimate an exhausted/determined parent) this is what went down,

Me - either go in your diaper or go on the potty!!!

Alex - Can I flush my pee down?

Me - Yes, anything you want!

Alex – Okay I will go on the potty.

With that people, Alex proceeded to urinate on his little potty that we purchased several months ago and Aaron has tried to put in the Goodwill box numerous times. We have tried all sorts of bribery to get him on the potty. Who knew it would only take letting him flush the toilet???

This kid has been virtually pain free for over a week! He will not urinate in his diaper. The only time we have had an issue was when we were running errands and he refused to pee in his diaper, so it looks like I will be taking a port-a-potty for him. Even better, we went back to the urologist for a bladder scan and he only had 30ml in his bladder. A huge improvement. There was concern given the meds he is on to help with the spasms, that it might make the retention worse. Nights are peaceful again! We still plan to go ahead with the MRI to rule out other issues, but if it is clear then we know that it was probably a perfect storm of constipation/dehydration/retention due to fear of pain.

This proves another reason hydration is important. After running Alex’s numbers in our nutrition calculater he was definitely about two cups short a day in fluids. I had not been concerned as he has a cup with water around him most of the day, but after watching him and measuring he wasn’t really drinking much at all. We are now compensating with water boluses via his g-tube and keeping much better track of his fluid intake.

Well, that about sums up our fun for the last several weeks. At one point Aaron and I turned around to Alex and reminded him, “Hey, kid, you are supposed to be the easy one!” Pretty sure he laughed maniacally.